I anticipated the shitshow. I knew that one day it would eventually be. I was so afraid of it, my brothers were too. Dad is still afraid of it.
I remember back in the beginning, we used to all sing the Parkinson’s shuffle and dance around together. Music always seems to help. He and his sweet wife would play music, sing and dance together. The most joyful moments for me and I am sure for them too. On occasion, in the mornings he will bust out in a melody and some lyrics out of nowhere. Most trips to the bathroom, I start humming melodies to get his feet to move.
The violent episodes of dyskinesia have mostly subsided except for an occasional episode of his hands shaking. He used to be like a ping pong ball, especially when excited or stressed. I was always impressed that he would and could ride his bike, a normal, two wheel bike. Even though once he parked or crashed into the bushes at his destination, he couldn’t stand or sit still. Some would probably define that as a shitshow.
Either way, dad has not been in total control of his body for about twenty years now. And it just keeps getting worse.
What kind of hell is it when your mind is still functioning and you can’t will your body to get up and get out of bed to make it to the bathroom? What kind of hell is it that you want to get up and do something, anything… and you can’t. You can’t even reach for the pill that may give you some relief. And your brain is still working. Solitary confinement of the body. Pure hell.
I know he restricts his liquids because then he will have to pee, he told me. Another challenge…for both patient and caregiver. “Dad, I am here to help you.” “I don’t want to have an accident or be a bother.” “Dad, this is why I live here with you.” He gets dehydrated and more dizzy. It contributes to lack of consistent bowel movements. I have no clue how it’s affecting his meds, but I suspect it is. And, it’s his body that I am not inside of so I don’t know. What right do I have to tell him to do anything at this point? I make things available. I make suggestions and offer common knowledge. “Dad, you know you should drink some more water, it helps you poop.”
I know a lot of us take our bodies for granted. We overeat, drink too much, don’t get enough exercise or fresh air. Without disease, we take for granted how perfectly they function. We take for granted getting up to make it to the bathroom on time.
As a caregiver, I get a tiny pin head of a glimpse of how it feels to not be able to do what I want when I want. After all of the awesome food that I cook for dad cycles through, I wait. I know most of the time he is waiting and he is always concerned with his bodily functions. He can’t move. He can’t eliminate. He can’t sit up. He can’t swallow. I hate seeing my dad reduced to the elementary functions of bodily processes. Truly a shitshow of sorts.
We get about twenty to thirty minutes a day of humor and current events, on a good day. In the morning, we have fun talking about the news lady’s crazy eyebrows. The other day we got to talk about how funny it is that he gets to see me parent my daughter at about the same age I flew the coop. “Everything comes full circle,” I said. He said, “Hmm.”